My yellow car!

Ella and Clayton got really into Christmas this year. They were so much fun begging to open more presents and helping to unwrap when it wasn't their turn. Clayton was disappointed with every present that was not a car. 'I want this be a car'. So my apologies if you bought him something without wheels. I especially apologize if you bought him something that was not a car and that was opened at the same time his sister opened a car in his very favorite color, pink, and if he screamed that he wanted the pink car and not the very age appropriate soccer ball that you lovingly chose for him. Really he will love your ball in 3 weeks, I promise. Until then the pink car and the soccer ball have gone into hiding. It is better for everyone. Mya got a hold of a nasty cold and has pretty much been asleep since Friday, so she didn't get much of a chance to enjoy her loot. But she has been enjoying much of her loot since a few weeks back when Santa made a very special early delivery. He does that here.

So now the de-cluttering to make room for the re-cluttering has begun. I have already pulled a box full of toys out of the playroom. I didn't move fast enough though and Clayton saw the 2 broken dollar store cars headed for the garbage and replaced then in their spot of honor ('You no take my cars, they go in my shopping cart'..followed shortly by... 'this is broken, you fix it'). I think I broke my foot on dollie's new bed which somehow always manages to find rest in the kitchen. We have more kitchen gadgets than we have kitchen to store them in. My very first loaf of bread is almost finished cooking in my brand new bread machine, set on the wrong setting, absent the oil I failed to add. So that will be yummy for sure. This is sure to be a productive and restful week off, oh wait we don't have those here.

I hope everyone out there who celebrates did so with style (and received more cars than you thought to ask for). The Christmas card photos:

Dear Santa

For Christmas I would like a period of time with no events, no news, no discoveries. Any length. The longer the better really, but I will take any reasonable amount. I guess the good news is that the things we learned this week aren't all that new, they have been ongoing, in front of our naive and unknowing eyes. Okay the breathing thing we knew was not perfect. She turns blue. It happens. She turns pink again. We watch, with reasonable concern of course. I have even been known to recognize that the first time we speak to a medical professional about the color blue that we will be hearing words like oxygen and monitor and pulse ox. And we heard those words today along with the unofficial diagnosis of obstructive sleep apnea, because she did it in front of the doctor right about the time we brought it up. Well, not the blue part, but the not really breathing part. She saves the blue part for home. But they (the words, I got side tracked) are still just threats. We have some more official testing ahead of us before they become a reality. Ugh. What if they become a reality?

It also appears, although this requires some additional testing as well, that Mya has some level of hearing loss. Likely has always had based on the reports the neurologist pulled up today, which (giant elephant sized surprise) were never really conveyed to us, her parents, or any other doctor I guess. We know she is hearing, she responds to voice, she digs her piano and the radio. We also know she loves loud noises like when we vacuum or spend short periods in a crowd, so the fact that she would have hearing loss is not a huge surprise now that we know to think it through. So I suppose the plan, just as I was thinking we were done with plans for a little while, is to retest her hearing in about a month with the expectation that the results won't be all that different. In reality she needs a sedated ABR to really get a good picture of what she is hearing. But with sedation comes risk so we will continue to discuss whether that test makes sense in the immediate future. If she would benefit from a hearing aid, we want her to have a hearing aid, but finding the balance with some of these tests is often complicated. Our neurologist is also working on getting us set up for a sleep study to see what is going on with the apnea and what the best action might be. In the meantime we are going to decrease one of her seizure medications which could potentially be contributing to the problem, add Flonase to her routine and add in another medication which could prove helpful for seizures. I feel like our complicated world just potentially stepped it up a notch.

The real story

C: Santa's coming! We better open the door.
A: Oh he's coming in the door, I thought he came down the chimney?
E: No, the door.
A: Oh okay. How does he get here?
C: He drives a brown car.
E: A pink car!
C: He has to work first.
A: What's Santa going to bring you?
E: Presents. For the babies.
C: Candy canes!
A: Does Santa have reindeer?
E: Yes.
A: How many reindeer does he have?
E: 2.
A: Who is baby Jesus?
E. Santa Claus.
A: How do you tell baby Jesus and Santa Claus apart?
E. Ask Ms. Maria.
A: What color does Santa wear?
C: Red!
E: Red. And a hat.
A: Oh, and a hat?
E: Yes, please. I have pink on.

Well they just heard of Santa's 'existence' a month ago, so I guess we have made good progress.

Cupcake anyone?

Imagine my delight when Ella and Clayton reported they had candy canes in their backpacks after preschool. Fantastic. Ella managed to get into hers on the 37 second ride home and so that meant we had a candy cane snack while I was making lunch. They sound innocent enough until they turn into 4 inch daggers carted around by sugar-hyped 2-year-olds in slippery socks. No running! I am still finding pink goo everywhere I go and they are only half-eaten. Ella's has bits of hair and fuzz stuck all over it but she didn't seem to mind. I wonder if they will forget about them by the time they get up from naps. They never forget about anything, who am I kidding.

I am working on being that parent who can roll with it rather than the kind that meets an early grave due to anxiety induced panic attacks. Mostly I am still in the fake-it till you make-it phase. They need to be free to explore and create and all that nonsense. I get it. I just know that sometimes that means I spend the greater part of naptime digging moon sand out of the hardwood. I guess the idea of the stuff is that it a little less horrible than regular sand because it brushes off easier. Maybe? Who knows, it just showed up at my house one day, and it is a recent favorite. Ella had the ziplock opened and the bag dumped before I could re-direct to a less frustrating activity. So we made moon sand cupcakes and let me tell you they are yummy. And pink. You know what is more awesome than moon sand cupcakes? Play-dough cupcakes dipped in moon sand and delivered to you in the 'other room' when you aren't paying attention by a toddler whose sneakers have grabbed every last pink grain that has landed on the floor. The stuff is everywhere. So now we have sandy play-dough and a trail throughout the house. And Ella was covered in the stuff when she got tossed into bed so I need to remember new sheets tonight. This is me faking it, because I haven't made it yet.  On second thought, I think the candy cane daggers are going into the trash

Good Morning

Everybody who has been through something, anything, has that moment that is forever etched, the life changer. For me that is December 9, 2009. Bernie would say December 8, but for me it was the 9th. It was waking up with that sense of dread and for the shortest second reeling to remember what I was trying to forget. And then it hit me, my little girl was dying inside of me. Yesterday I saw her. There was a space between the bridge or her nose and her skin. It was filled with fluid. I could see it. There was a space between her heart and the wall of her chest. More fluid. Her brain, they just weren't sure. They threw out words and conditions. This looks like Trisomy 18 or maybe twin-twin transfusion. And then I was partly educated on a these words and conditions and none of them were good. None of them made any sense to the doctors so certainly not to me. It was all happening so fast and they couldn't tell us what or why and there was this little girl dying and these other precious babies, so blissfully unaware, were not. What does this mean for all of them? How am I ever going to get out of bed? When I woke up on December 8th, everything was perfect and full of hope and joy. December 9th was different.

We have had more moments like this, the life changers, packed into these last 3 years. They told us we would have to choose, between these babies. They told us they would come too early. They showed us her brain. They diagnosed her seizures. At times it feels like it will never end, that we will forever jump from crisis to crisis. Surgeries loom and illnesses are always threatening. Mya is the only child I have ever known who can choke on an empty stomach and she does it regularly. We live on an alert that has become normal. I have had more days when I didn't want to get out of bed, and there were times when I didn't. I don't think I was chosen, like God has this giant list of U-turns to hand out to His people. Like, see that one over there, I'm going to shake it up a bit for her. I don't think He does that because He would not do this to a child. Instead I think He helps us through it. He helped us get to today and He will help us through tomorrow, whatever it brings. Our lives have been touched in so many ways that they never would have been if we had been allowed to go straight.

The other night my maniacs were yelling. They were playing a game and streaking through the playroom being airplanes. When they flew by their sister she turned her head and she yelled too. I got out my phone and tried to convince them the repeat the act so that I could catch her squeal on video, but those little stinkers wanted to see themselves in the camera. So I can't share it here, but trust me when I say it was awesome. I get to wake up to this every day and it's something I never would have thought to ask for.

to have and to hold

it's been 7 years since we said I do

those years have been good to me and you

sure it may seem more downs than ups

when sleepless nights empty our cup

but through the struggles, pain and tears

we've built a life, worked through our fears

we've kept each other, our love in sight
it's possible we did something right

our 3 children: sweet, strong and brave

a testament of the love we gave
Ella's will and Clayton's smile

Mya's heart, her peace, her fire

together we'll have many more

with challenges still, that's for sure

but we can do this, you and me

what's still to come, I can't wait to see

Happy Anniversary

these 2 kids had no idea where they were headed

I'm guessing these 2 don't either

 

Well aren't you strong

I made Mya a stroller blanket today. I think it turned out fabulous. In fact, if it wasn't 30 degrees outside and dark we might just be going out for a stroll. As I was piecing together the design, or really making it up as I went I got to thinking how very few people would really get why a blanket might be a big deal. First you would have to understand what it means for Mya to get dressed. Bare with me here, but flex your muscles like you are a body builder. Now hold it. Both arms. Now kiss your bicep. I'm just kidding, that's not part of the demonstration. Now I am going to put your shirt on (don't be shy).  Keep em flexed but I am going to try to straighten them out. These darn sleeves. At least they stretch though. Now the coat. Oh wait, it doesn't stretch. Keep em flexed. We might need a bigger coat.

So anyway, we choose our attire wisely. Coats are a pain, and even if they were carseat safe the bundled bicep is about 10 times harder to strap in than the unbundled bicep so mostly she doesn't wear coats. Add to that her lateral supports in her stroller are set without much extra room. That means we juggle blankets and toss coats over top, then pick them up off the ground a few times, and moving from car to stroller cannot be the most comfortable experience for my little lady. Today in the transfer I caught her grimace as I fumbled to get her feeding pump unhooked, shirt pulled down and her biceps strapped in and then tossed on a few blankets. And I was cold too so I could only imagine how she felt. There has to be a better way. Ta da! Well, hopefully ta da. We get there eventually Mya, sometimes it just takes us a minute to catch on. 

And a side note. Sometimes I like to imagine that Mya will have first words and they will be 'for crying out loud people, I hate pink'.

Gobble

I am thankful for:

• the 4 therapists who walked through my door today and the 2 others who didn't. These children have come so far and we couldn't have done it alone.
• my chocolate chip cookie making assistants and for this semi-healthy recipe that removes a smidgen of the guilt (and I swapped out half the butter for avocado too because I am just that neurotic)
• 60 degrees days.
• online Black Friday deals. This momma is not brave enough to leave the house.
• making it to day 24 of a 90 day fitness challenge without missing a workout and feeling fantastic.
• Mya's hugs and rockin' hair.
• Ella's dance moves and devotion to pink.
• Clayton's love of cars and creative use of the word actually and the phrase 'you better'. Also, for his devotion to pink.
• Bernie.
• financial security that means we have never worried where the food will come from or how the bills will be paid or if my children will have a Christmas. There are very hard-working people out there who just can't say that.
• staying out of the hospital.
• anyone who has ever supported this family.
• the Thanksgiving dinner assignment of 'rolls'. I can totally handle that.
• concurrent naptimes.

Rock changes diaper

My week is full of randomness, so too is this post.
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I tried to explain rock, paper, scissors to my two-year-olds today. They were fighting over who got the first diaper change. Ella picked rock. Clayton picked orange scissors. Ella won. Clayton took it well.

Mya just giant-sneezed. Clayton shouted out from the other room, Oh goodness!

I waved bye-bye to my pee-pee yesterday. I also ate a dum-dum. That's a lot of hyphenation.

I had this conversation with Clayton while I was sitting on a Sesame Street step-stool watching a fully-clothed Ella not poop on the closed toilet lid...our new favorite game:

C: Where did daddy go? 
A: He went to the store to buy wood to make your new bed. Do you want a big kid bed? 
C: I have a bed in my room.
A: But we could put the big kid bed in your room.
C: I no need two beds.
A: You make a good point.

playing cars

he is a mess, and he is happy. one giant victory.

Who would have thought an apple could do that

I feel like so much is changing these days and I am just trying to hang on for the ride. Clayton, who I would have placed second in the race, is using the potty (when he feels like it). He is so proud of himself! We haven't made the decision to move forward with getting out of diapers. In fact, I take zero credit for the strides they are making at this point. That would be their sitter and their therapists pushing us along the path to diaper freedom. But soon, when we have the energy for chasing naked bottoms, we will get there. Ella, our tallest, is quite literally growing out of her bed. So big kid beds are on the to-do list. Soon. Mya's medication shuffle somehow landed her with pretty great alertness, when she is awake. She is still sleeping well past noon on most days, but it is great to see her attend to things again. Her smiles haven't really returned as I hoped they might, but she just seems more comfortable.

We had Mya evaluated for augmentative communication devices and she had a great session. I was so encouraged with what the therapist had to say. She demonstrated that she has a grasp on cause and effect relationships with her switches and the IPad, and those are skills we can build on as she enters the school system. We are moving forward with getting Mya an IPad of her own. It is unreal what she can do with that device and the apps that are out there for people with needs are really amazing. I can't wait to see what she can do when she can use it on her time, rather than the scheduled hour on the calendar when the therapists are in. For the very first time, sitting with that speech therapist doing her evaluation, I could envision Mya having a voice and making choices about her environment through assisted devices. I am so excited for her to show us what she is capable of. My kids are awesome and I am so proud of them all!

What's with the Purple Ribbons?

Monday night I shuffled into Mya's room to investigate the 1:30 am dance party. Bernie was standing at her bedside holding a camera. She's smiling, he said. And I paused for the seizure. That's what a smile has been lately, the first presentation of a seizure about to take off. But it never came. We captured a smile during their 2 year-old photo shoot back in March, but don't recall seeing one since. This one was real.

For this Epilepsy Awareness Month I wanted to find some way to convey what it feels like for the millions of families living with Epilepsy. They say the Epilepsy is one of the least understood of the major medical conditions. If you have never lived it, it is hard to appreciate the highs and lows of a disease that has no cure and so profoundly impacts (arguable) the most important organ in the body. So I am settling on a re-post, because I think it captures so many of the things we are still dealing with today.
-------------------------------------------
Where was God the day the Devil was dreaming this up?

Let's make this condition and give it to those who already have an uphill battle.
Let's hand it exclusively to infants and toddlers.
Let's make it so devastating that parents choose medications with life threatening and life altering side effects, knowing they probably won't work.
Let's make it freeze the brain in its most important years of growth.
But let's not stop there, let's make these kids regress.
Let's take away the most basic of skills.
Let's make it so outgrowing it likely means growing into a new seizure type.
Let's call it Infantile Spasms so others think its not so big a deal.
Let's make it a really big deal.

I hope God was making butterflies or waterfalls or future brilliant minds that would some day cure disease. I hope God was fighting for this little girl to hang on to her smile.

My full post from last September
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I hate to say that I was right about the new seizure types, as we have added at least 3 more to the list in the last year. I wrote that post as we were rushing Mya's g-tube surgery because she was no longer able to eat enough. She was sleeping all of the time, and that feels very familiar these days. Her smiles were fading away, replaced instead with the stupor brought on by the constant refinement of medications. We are living that today as well. It is hard to feel like there is hope when this battle seems to always turn back on itself. I think that maybe a sleep deprived dad who would stop to grab a camera at nearly 2 in the morning means there is hope. We will never stop celebrating this child and what she is capable of even while fighting this disease. The purple ribbons are for kids like Mya.

We can do holidays

So this is where I am supposed to post pictures of cute kids in costumes. So I will, because I am a rule follower.

Cute kid #1:

Cute kid #2

Cute kid #3:

Clayton told me his sucker was broken. No teeth bud, just suck on it. Then he claimed all the candy in his bag. This is mine, and this is mine. No mommy you no eat my candy. This is mine. Mommy you open this for me. And then he ate until he could eat no more. Mya was awake and happy. She makes one beautiful princess. Ella was that kid who keep coming back to the bowl for one more handful. It is cute when they are two. At some point it transforms into greed, but we aren't there yet. She had every variety to choose from but for some reason she wanted the giant tootsie rolls, for her scoop and for Mya's. So we had some giant hard sticky candy confiscation going on when we got home. I no want to go home. One more house. So we walked and we knocked and we trick or treated and thanked our way around the block. They were absolutely fantastic.

I am told I will miss this

My good nappers have been abducted. These creatures that have replaced them have this habit of laughing and singing and removing all articles of clothing below the waist. Above the waist too if they can manage. They also pee on the floor. And color the couch, but that is another story entirely. A story I need to begin to tackle. Aren't they precious?

Slow Cooker Inspired Madness

We appreciate a good Twilight Zone episode now and again. Tonight's went something like this:

(After the third trip to the kitchen for carrots, not a piece of chicken nor a dumpling touched. His broccoli devoured.)
C: More carrots please.
B: Bud, we are out of carrots. You ate them all.
C: You need to buy more carrots mommy. I want you to make more carrots.
A: I will be sure to do that.

(Meanwhile across the table)
E: mmm (eating broccoli...not a piece of chicken nor a dumpling touched. Carrots of course are gone)
A: !!!!!?????!!?!
B: What happened here today?

Just like the wheels on the bus, I guess

So we have been here before and I know we will circle round again. And again. But each time we make the lap the fear whispering at our shoulders threatens to roar. Go away my friend. We've got toddlers to chase and appointments to manage and art walls to build. But it is there and it can't be ignored forever. It finds a way through. We have grown accustomed to it really. As much as a sane person can, that is. Okay mostly sane. Some day a therapist will get a hold of me but right now, we are saying sane. I mean really we held off on ordering cribs for our babies until they were several weeks old because we didn't know how many we would need. Reason for return? Exactly. Before we brought her home Mya's neonatologist shared with her daddy the one and only life expectancy that anyone has had the courage to give us: 2 years, and it would be the common cold that took her. Apparently wrong. At 7 months we learned that the seizure activity in her brain would very likely stall her development. The opposite of fantastic. So right, we get it fear. Move along. We are full up. And we are tired. And we want to enjoy our kids without you in the wings.

Over the last several weeks Mya's seizure activity has increased significantly. The weekend before last she was having 5-10 before her first feeding and at least a half dozen in the hour I held her at night. I shutter to think about what a 24 hour EEG might have looked like. At our last neurology visit several weeks back we decided on an increase in one of her seizure meds to hopefully address 3 separate issues: her inconsistent sleep, her increased muscle tone, and her seizures (oddly enough). And while the increase did seem to help with the sleep it did not have an impact on her seizures at all. Or maybe it made them worse. It's hard to say. So when we called last week with the update our Neurologist immediately made some changes doubling her morning dose of her second seizure medication and increasing her baclofen to hopefully address the tone. And these two medications together have held the blame for her transformation into a zombie a year ago which lead immediately to her need for a g-tube.

Bringing us to today. And today she woke up at 2:30. PM. And fell back asleep before 7. The weekend wasn't much different and so today we must tell the fear to move along. But it isn't listening. What if these are our choices? What-if we are returning to the days of carrying a sleeping child from room to room and they stop the seizures but the result is a little girl who can't enjoy the reprieve because she is out cold 20 hours a day? Or she gets so tangled in the web of side effects that we cannot tell up from down? What if we never get this figured out? I am tired of watching my child go through this every single day. They scare her. She cries and is confused and gets knocked off her game. Or she sleeps. I don't remember the last time I saw a smile. A real one. What if she never gets that back? But we have to hope that she might. We have to pray that she will. So move along. In the mean time we will take our naps all over town and do our art projects in shifts. We will enjoy some extra cuddles.

Dear Lord: Thank you for my children. However, also...

...when does the screaming stop?

If I was more handy I would be rich

I learned last week that in 5 months we are losing the blue chair. The blue chair! Can't you just see Mya clinging to the thing as it is whisked away. My blue chair! That's kind of like if I told you that on March 4th all the chairs in your home would be removed and if you cared for seating you could replace them from the inventory of a single IKEA in Nebraska. And pay shipping. And go through insurance. Are there IKEAs in Nebraska? Oh wait they don't ship do they? Do they take my insurance? Exactly. Okay that might be an exaggeration, but the point is that Mya has very few options and they all cost way more than a place to sit down should. As we discussed replacing said chair before she is laying on the floor in tears we got to talking about what it cannot do: roll. So today we tried to swap out its base for a base with wheels. When PT Patti told me she had another family with a wheelie base for the same seat that was not being used I got excited and started Googling. Oh won't it be nice to be able to move her from room to room without the stoop and drag motion! Umm, Patti, I don't think that is going to work. Oh it will work, she says. My geometry brain said no, but I thought maybe Patti had some tricks up her sleeve. My geometry brain was right. I hate it when that happens.

So here is my issue. If you are making a seating system for children with special needs, why would you not consider the needs of those children? I know there are a lot of kids who just need a little support, but guess what? There are a whole lot of other products out there that provide just a little support. If I put my child on that base her chin will be touching her chest if I am not holding it up. Lower the back, or make it pivot, or extend the base. I mean really there are a lot of choices. Who needs a feeder chair and can sit virtually upright? Okay probably a lot of people, but not all! And the fix is so simple! Your design stinks. At least that's what Mya was telling us (when she could get her head up that is) as we tried to 'make it work'. Our next best bet is to build her a scooter board type base and add some velcro on the bottom of the current base, however now I know that one will be heading out the door very shortly so probably we will be stooping and dragging for a bit longer. Although I just Googled our alternatives in new seating systems with significant recline options. I might as well get started on our scooter board.

What is this crazy woman talking about? Oh, I see!

We should probably buy these children some paint brushes.

Hey dude.

Hey, I'll take it

Nap time lasts for 4 hours these days. Here's how the first 2 hours go:

Team: I love you , you love me
Team: round and round round and round.
C: AHHHHH my night night. My towel my towel. No Ella, No
Team: Upppp Downnnnn. Upp Down. Hehehehe
C: Cheeeessee
E: Oh no I pooped. I POOPED!
C: I see you mommy!
A: I see you too Clayton. Now we are getting new diapers and we are putting our sheets back on the bed and we are keeping our pants on this time and we are going to sleep. Got it?
C: Noooo. My socks!
A: Those too. Now here are your socks, here is your night night, here is your blankie, here is your brown towel, here is your yellow towel. Good night.
C: MYYY towel!
A: Okay I missed one, here is your orange towel. Now this is the last time I am coming in here.
C: Good night mommy.
E: I see you! Hahahahaha

you can call them by any other name...within reason

I am the mother of a special needs child. I am also the mother of 2 typical needs children. They are the same age, and they are a team. They don't know yet that the world sees them differently, when they are together and when they are apart, they don't catch the distinction. They don't notice the stares, the unspoken questions, the overly-kind smiles, the gentle and not so gentle probes for 'the story'. They don't notice that in her absence so are those very stares and that the overly-kind smiles are replaced by the real thing. They are two and a half. They only know that they are a team, a team that has never really been apart. I want them to stay this open and accepting and unjaded. I want them to go out and explore and I know they will find a whole lot of good but I am afraid of what else they will see. Someday they will start to hear or notice that their sister is different. My hope is that they will know in their hearts that different is fine. Different is better than fine, it can be wonderful, but it can also be a very difficult journey.

People will mistake them for twins. She has different needs so, for now, Mya will go to a different school and that may lead to some misconceptions. We will correct them, but they will continue to pop up from time to time. With two matching last names and matching birthdays on a class list of 8, twins is the obvious conclusion. It happens all the time with two toddling toddlers and one in a stroller, the sun shade often down hiding her face. Some days I feel like I should just staple a sign that reads 'triplets actually' to my purse and hold it up in response to the inevitable question. It turns out that preschool is no different. The distinction is far more important than most people realize, maybe just to us right now, but it is there. They are not twins. Her absence doesn't exclude her from the team. She is still a vital member.

There are places we let it go because to passing strangers it doesn't really matter, but not in preschool. In preschool they should be safe to be who they are, they should be completely understood. In preschool they should be completely accepted. All 3 of them should be seen. So today I made the correction in the pick-up line when I heard them call out that the twins' mom was here: They are triplets actually. And I looked down at their sister. Can we not call them the twins? It's not really a big deal, but at the same time it's really a very big deal.

Operation save the night night

Crisis

Averted

we're going on a trip in our favorite rocket ship

Last night Clayton goes: It's nice outside. And it was...nice outside. Huh. Where did you come from my grammatically correct and observant toddler? I thought your meteorological skills were limited to 'allll wwwwet. It alll wet'. Earlier in the week as Ella fussed for daddy Clayton promptly informed her: Daddy's at work Ella. And she looked at him like, oh, problem solved then. Sometimes I feel like I could just jump in the car and run a few errands and leave the dynamic duo in charge. And then about 2.7 seconds pass and Clayton is sitting on dolly's head and Ella is screaming about Clayton sitting on dolly's head and I remember why there are laws against that sort of thing.

Two-year olds are maddening and quirky and nothing if not entertaining. They have each been giving us a run for our money these last few weeks. Mya is officially off the diet and we are working back into a feeding schedule. She hasn't been tolerating the heavier formula very well so we are re-introducing over-night feeding to see if we can spread out the volume. Sleep continues to come in waves and her seizures are really inconsistent. She has been giving us pretty decent alertness during the day and doing some really great things with her switches. She seems to be enjoying turning on her music and lights. Ella is testing her limits. I caught a plate of carrots and ranch dressing as it flew off the table because she wanted more milk. She doesn't think twice about chucking her fork if she doesn't want to eat what is served. She will lay flat on the floor and scream if you tell her no and then laugh in your face when you put her in time-out. She is growing picky about her clothes and how you fix her hair. She loves to read books and color. She sings more than she talks and her favorite show is Little Einsteins. Clayton is actively working on his vocabulary and pronouns in particular. You can tell he just really wants to get it right. Last night he started to address me in a sentence (a full sentence!) as mommy and then stopped and revised himself to use 'you'. He gets so frustrated when you can't figure out what he wants but the relief when you catch on is palpable. He is craving hugs and making bargains to get what he wants. His latest battle is fighting the diaper change and he rarely wants to be fully dressed. His night time security item collection continues to grow and is about to bury him alive. This morning he was sure to point out the 'pillow' he had made by laying each of his 15 'little towels' out flat and stacking them precisely on top of each other.

Coolest room on the block

This might have taken a bit longer than it needed. The before picture was taken round about the end of April, and we just finished last weekend. Really after the spray painting was done and crib assembled we could have finished in about 45 minutes. Or four months, either way. Looking at it now I believe we owe Miss Mya an apology. Her room was officially a random collection of furniture and baby gear. The master plan when I carried three (3!!!) people inside of me was to have them all in one room so all cutesieness was directed there. That lasted for about 2 months until little people started to sleep longer and other little people were keeping them awake. Mya was, at the time, falsely accused of creating the ruckus. The first night to herself she slept through. It turns out other little people were waking her, and she just struggled a bit more with falling back to sleep. We found ourselves at that point in time using every available minute to fall asleep at an Olympic world record setting pace. Decoration was nowhere on the radar. Oh, the memories. Anyway, we arrive at today. Today her room is fabulous.

the before

the after

The tour:
Before the sleep-deprived TV purchase we were making out for less than $100 thanks to a great deal on some frames, a few cans of spray paint and knowing the right people for a fantastic crib swap. We added extra storage (Target) for her medical supplies. The crib has a drop side, which at this point we can just keep dropped. This allows us to do diaper changes in bed which has been great. It also means her brother and sister can pull over their step stools and jump up to tell her good morning. The mattress is a continuous work in progress. Right now it is elevated with a few towels, covered in memory foam in various layers to create a dip in the middle so she can be on her side. The whole getup is covered with a mattress protector, them more blankets for propping, then a final smaller mattress protector to make the semi-weekly breakfast-in-bed clean-up a bit easier. The TV has a (currently broken) DVD player built in and swings over the bed and tilts. We have fallen in love with the sleep timer and discovered that PBS broadcasts kids shows over the air all through the night. The star lantern works. Like I said, fabulous.

I am the mother of preschoolers

Oh let them do well. Let them love it. Help them make new friends and grow and share. Let them know that there are people outside these walls who will love them and help them and cheer them on. Let them miss me only a little bit and emerge with smiles on their beautiful faces. Give them challenges and opportunities. Keep them safe but teach them to explore, to expand and to test. Let them do wonderfully well.

Praise the preschool teachers among us

We said no to crackers. Well first we warned that he would get two more, then we gave him 2 more, then we said no to more. The day kind of took a downward spiral after that. I hope he took more away from preschool open house than the memory of being dragged home down the sidewalk screaming with mom on one side and dad on the other. Two hours later I wasn't sure he still remembered why he was so mad. Clayton, can you tell me what is wrong? MORE CRACKERS. Okay, he remembers. The kid has a mind like a steel trap. But we press on. And we snap photos of puffy-eyed rage because laughing at the absurdity of the two year-old meltdown is the final step before locking yourself in your bedroom with a bottle of whatever we might be convenient. And if you don't know, the two year-old meltdown is contagious, which brings me to my sympathy for their teacher as she will have 8 of them to contend with, and she won't have any booze to turn to for comfort nor does she carry a camera in her pocket to lighten the mood. Bless you.

Someday we will say...

Remember when they were two and a half and Clayton was afraid to poop or to step on shiny floors so we had to plan our outings around those two inevitable situations?  Remember that he collected every washcloth in the house and needed to take them to bed every night and even though there were 15 of them he knew if even one of his 'little towels' was missing and had to go back out an find it? Remember that month Ella was terrified of the bathtub? Remember how she only ate fruit and chips and yogurt covered raisins and how she munched the chips, appropriately enough, like a chipmunk and more landed on the floor than in her mouth? Remember how Mya was never really in ketosis when she needed to be but then when we decided to call it quits we couldn't get her out? Remember how that whole summer she wanted to see us between 2 and 4am every night and how in the throes of exhaustion we finally said f-it and bought her a TV? Remember how the DVD player broke after 3 nights? Remember when 'please don't throw the beans' meant without a doubt that they would throw the beans and when they thought time-out was funny? Remember how sometimes the only way I made it from the morning's first 'Hi mommy!' to nap time was the phrase 'they are two, they mean no harm' that I repeated in my head over and over again? Remember how you really thought you were going to lose your mind but somehow you never did? Remember how Clayton would have to search out 'his Ella' if he couldn't see her on the playground and no matter how fired up they were the second they saw that Mya needed our help they made themselves into angels? Remember how much Clayton was in love with quarters? And black phones? And remotes? And cars? And keys? And yellow? And how great Ella was with her dollie and how much Mya liked to snuggle?

AND I have no creative title

We sat at the double wide table. A nurse, neonatologist and neurologist followed us in. My first thought when that grayscale image popped onto the screen: please God don’t let that be my daughter’s brain. Let it be some screen saver, some example of just how much damage could be done, let it be from the poor couple that entered this room before us to have their dreams shattered. And then they started talking and they didn’t switch the image. And I knew. I didn’t need their words. Nothing about this was going to be easy, nothing at all. And then I couldn’t breathe and the tears I was fighting with every ounce of the strength I had built over those long months started to flow and I just couldn’t stop them. The concerned eyes and the glossy words just blurred into the white walls and that grayscale image burned into my mind. How are we going to do this? This is not what I wanted. This can’t possibly be happening. She fought for this, to be here in this world. Now you are telling me that the parts that keep her here are well intact but the whole rest of it, the parts that define us and comprehend the world around us, those you aren’t so sure about? And they closed with, ‘but she is beautiful’.

If you would have told me two years and four months ago when I walked out of that room that I would be sitting here typing one handed on a balanced keyboard with that little girl on my shoulder, the only thing that calms her some nights, with her evening meal being pumped into her belly through a tube, and that the most stressful part of my day will have been prompted by her brother and sister’s reluctance to share, I would not have believed you. If you had followed with an example of our every day exchanges, something like yesterday’s ‘Is she stuck in a seizure?’ answered quickly with a ‘Yep. What do you want from McAlister’s?’ and told me that we would be just fine I would have said no way. But we are fine. And she is beautiful. And tonight she got excited that she could brush her fisted hand across the smooth cover of a book. And I was proud because I know that it was purposeful. Tonight she was happy. So to two years and four months ago me, you can breathe.

Things that have bothered me in the last 24 hours

Anyone living in the midwest right now with a perfectly green lawn.
The question 'what is that?' to internet posts. You are online. Look it up.
DVD players that break on the third use.
Humidity.
When the feeding pump pumps air before the food is finished (completely my fault).
Hair dressers who switch salons right after they master your cut to one more expensive upscale .
Drivers who accelerate into your merging room after you have signaled.

Alarm clocks.
Political calls.

Easy Enough

And it's been a while since I have written about my disastrous attempts to leave the house. This field-trip Friday I thought maybe we would make a few stops and then hit a park. I needed one thing from the fabric store and one thing from Target to keep moving on my pricing and tagging for next weekend's consignment sale: safety pins and card stock. Easy enough? I was feeling pretty cocky as we paraded into the fabric store. Everyone was listening and holding onto the stroller in their designated spots. No one darted into traffic and all dollies were left to guard the carseats without protest. I ignored the nice couple going on about my sleeping little boy (not in fact a little boy and not in fact sleeping) and went about my shopping experience. Until. We crossed the threshold of the carpet entryway onto the shiny waxed tile floor. Oh yes. I remember now. Clayton is afraid of shiny floors. Grand. So I carry his adorably petrified self and push the stroller at toddler walking pace and find our safety pins. In order to exit they wanted me to pay for the safety pins. Who knew? So to do that I needed to dig my purse out of the bottom of the stroller and set the little boy (the real one this time) down on the shiny floor to do so. This stroller has a ton of bells and whistles for the kid mind you, but access to your purse is not one of the advertised features. Let's just say the fabric store people smiled kindly and were happy as we made our way out the door.

Back in the car. My arm is tired, Clayton wants the keys. I need the keys to drive. I both won and lost that argument. So the deal at target was he got to hold the keys if he stopped screaming. Phew. Again they are walking like big kids, this day just might turn itself around. Crap. The floor. He sits down at the edge of the carpet as at least 10 target patrons that have to stop short behind us wonder what I am doing to my child. Up you go buddy, let's get this done. And by get this done that would require buying card stock. Which they apparently stopped carrying sometime between when I bought it there 6 months ago and today. Fabulous. I could use so Zip-lock baggies so we grab those and head to the checkout. The lady takes one look at my entourage and then 3 or 4 looks at my Zip-locks. Is that all? Yep, we had a Zip-lock emergency, just ring it up please. My arms is about to fall off. Clayton hang on! Back to the car. Rewind and replay they key excitement. And we skipped the park. And I am not tagging and pinning because I don't have card stock to print on. But they are napping. Success! We did save the afternoon with biscuits. So I will leave you with photos. Mya and Ella were angels today by the way. THANK YOU LADIES!

this one ended in tears